Hi Jane,
Yes I thought the blog was good too. Glad you read it and found it funny. Yes definitely have to laugh about this.
Had a bath today and shaved my legs. It’s been ages since I’ve done both things. I used the red dot shampoo from Lush today and it does look longer already. I don’t think it worked that fast though.
Not allowed to go for a massage but off to Weston Super Mare tomoz to try on some boots in Next. Maybe have a walk round too as not done that yet.
Glad u are less traumetised & in little pain (assume that’s still the case). I think my back hurts due to the exercises. I went for a walk today and felt abit spaced out but other than that been ok today.
Tried on an old padded bra and it looks normal not lopsided.
Went back for my results today and to say I am devastated is an under statement. Although my tumour was removed with decent margins there is an area of multifocal pre cancerous cells next to it so I have to go in and have that removed also. It is only 10 days since my surgery and the dressings were taken off and it has all healed up now to be cut into again. Also one of the two lymph nodes was positive so I have to have an axillary clearance too. I feel so sad. I was feeling great this morning and now this. How can I cope??
Daisydi sorry to hear this! When will your surgery be? Try to stay strong. I think I would think at least they have found it now and they will remove it. That is the main thing. I had 2 sentinel lymph nodes removed in April so had 2 ops plus another potentially on the other side 2 months after radiotherapy. We will support you through this. Have you thought about counselling? Xx
Magsv i got my results on Thursday and got clear margins. I have got an onc appointment on the 26th now as I managed to get an earlier appointment as agreed to see another onc as mine isn’t seeing anyone in November.
What did he say about the fact you have been taking Letrozole to stop a recurrence?
Could you get a second opinion as you want to minimise the chance of reoccurrence but it sounds like different areas have different approaches? I would be against a mastectomy unless absolutely necessary and thats why I got a second opinion but other people think differently. I didn’t ask re different recurrence percentages but thought there wasnt any but I had IDC. I am sure my surgeon would have said if there was a difference though. See what others say though.
Take care,
This is all so difficult for everybody having to make decisions like this. Although my tumour was removed there are multifocal changes in cells next to it which did not show up on anything other than pathology. My second surgery and axillary clearance is booked for 29th November and now I’m worrying if there are other multifocal changes that havent shown up in either breast. I had a mammoplasty so a lot of tissue was removed in the first place. I’m now thinking should I have the whole lot off incase there are any more areas. Then another part of me thinks it has already shown up in one lymph node so whats the point. Linda I dont think counselling would help as all I want is for someone to wave a magic wand and make it all go away. I just hate this so much
Thanks for thoughts Daisydi and Linda. It is indeed a hard decision to make. When I was diagnosed with invasive breast cancer 3 years ago, I was so happy when I was told I didn’t need a mastectomy. I’d also researched things and had learned that the survival rates were exactly the same for lumpectomy plus radiotherapy versus mastectomy. I was very happy with my choice of keeping my breast.
This DCIS is complicated tho. There’s still a lot to be found out about it -probably because they’re finding more and more cases of it recently due to mammohrmd beign offers It’s usually not found out via lumps etc.
Anyway- glad I wrote this …it helps me gather my thoughts before final decision. My eyes are drooping. Time for bed - can’t even focus I’m so tired thinking about it’s all xxx
Magsv why are there more cases of DCIS being found do you think? (Mammohrmd beign offers?) What do you think you will do and how long do you have to decide? Hope you slept ok. xx
Oh my Linda! I must have been too knackered to read over that before posting. I think I meant to write more mammograms being offered. Because DCIS is usually found that way, more cases are being picked up than years ago when they weren’t routinely offered. I think research takes a long time and women are followed for 10 to 15 years, they’re still gathering info on best way to treat it. That plus better ways of determining benign cases and the various grades. Some cases will never turn into invasive cancer, but they’ve no way of knowing which ones will so just treat them all. Mine were both high grade and they know that these are both faster growing so more likely to become invasive sooner, plus they’re more likely to return - either as DCIS or invasive - after treatment. That’s why these types are always followed up with radiotherapy.
The surgeon I spoke to yesterday explained that the latest research has indicated that letrozole type treatment is of no benefit when treating DCIS - only invasive cancer. So hopefully mine is working on the other breast- that had me a wee bit confused. It’s also harder to diagnose DCIS accurately than invasive cancer via biopsies. That’s why they decided to remove my second one even although it showed up as benign in the sample. It apparently looked just like the one that was definitely DCIS.
I’m thinking along the lines of mastectomy …Maybe! I know I’ll just hate myself if I don’t do that and it comes back in a year or so. I’ll also dread each yearly mammogram even more than I do now. There’s also that 3rd area they biopsies that was thought to be ok to leave …what if they got that wrong? Should trust them - but my mind goes into overdrive in the middle of the night. I have very small breasts and this one had a quite large benign lump taken out 40 years ago so has always been smaller anyway. I’ve been buying post surgery bras since last op 3 years ago so now used to padding them up to make clothes look better ?. Think I’ll ponder it some more over the weekend and phone on Mon. with definite decision.
Gosh - so sorry about another long essay instead of a post! I’m glad your results were good Linda x
I though that is what you meant Magsv. Would you have recenstruction & when?
Maybe post on here again on a new thread to ask others advice or look through previous posts? Sometimes people on here who work for the website can advise you too.
I think someone at work knows someone who ended up having a mastectomy altough not initially and I think she had DCIS. Can try to find out but not at work atm?
So you will definitely have radiotherapy then!
Pity they don’t recommend what you should do although I want to be part of the decision making.
Hope this helps & thanks for the info on invasive cancer and recurrence. I am going to ask my surgical team re that when they ring me re my HER2 results as awaiting a call re that although it was negative after my biopsy. Not sure if it is the oncologist who tells you re that though.
Take care,
Linda xx
Magsv I messaged my colleague and she said her friend was told they were not convinced they got it all and so a mastectomy was required. All ok since. Not sure if that helps though.
Love Linda xx
Thanks Linda - that does help ?. I’ve also been thinking about the conversation with the breast cancer nurse who gave me the results last week. She was the one who set up the appt for the surgeon yesterday to discuss things further. She said that she understood my concerns (but I found it difficult to get these over as was emotional at the time) and that the main thing was that I needed to be in a place mentally where I was ready to move on from this and get on with life again.
She’s right! - probably not helping that my brother and sister both died of cancer since my first diagnosis. x
Magsv do you have BRCA 1/2? I know people on here are thinking about mastectomies on here with cancer in their family but I have read its more to do with lifestyle and would personally be reluctant to do so without getting a second opinion first at least. x
Hi Linda. I’ve been tested because of strong family history of various cancers. It came back as not having any gene … any known one anyway. I’m pretty convinced there’s something. Brother had very aggressive prostate cancer, sister had womb cancer and blood cancer, mum had breast cancer and dad lung cancer. Because all in age 60s said that was another factor that meant just an unlucky coincidence. Hmmm?
My daughter in law is a doctor and has a friend who’s a breast surgeon. she very kindly had a good look at my report last night after I took photos of it on phone. She reckons risk of recurrence with mastectomy on would be around 2%. With radiotherapy alone on the right would be around 10%. But that last number might be higher in as have had multiple areas of DCIS in the same breast, and there is some concern that margins aren’t optimal. Also said half of DCIS recurrence presents as invasive disease. Radiotherapy might be reasonable if priority was to keep boob and willing to take a higher risk of recurrence.
Magsv well that is a big difference isn’t it? Not really too knowledgeable able %s though. Does she recommend a mastectomy? Odd that the %s are so different than what your surgeon said though. X
Been sick yesterday and today. Not sure if due to prawns I had on Saturday a bug or the horrid taste. I rang the helpline yesterday and they said I need 48 clear hours not being sick before returning to work as there are alot of bugs around. They said they would get someone to call me today and the taste is due to chemo. I have been felling sick on and off for weeks though before surgery and chemo finished nearly 10 weeks ago. Anyone else suffering like me? My Mum has been feeling sick and off her food unlike me.
Well Linda- I might sound sensible on here ?Actually it was a very big decision for me and I was really dreading phoning up this morning to say that I’d decided to opt for a mastectomy. I think I block it out most of the time. I really wish it wasn’t happening - but maybe it’s too easy to block it out because I just don’t feel ill at all? I hope you’re feeling better now. It sounds like you’ve been feeling sick for a long time. I’ve avoided chemo so far (thankfully!) so I can’t comment on the cause x
Great news Jane. I have been told in my results letter I can see the surgeon 3 months after radiotherapy re the other breast being done. When will you go back to work?
Love Linda xx
x